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How My Chronic Disease Prepared Me to Be a Better Parent

Coming to Terms With My Connective Tissue Disease Completely Changed the Way I Parent

Five years ago, I was diagnosed with an undifferentiated connective tissue disease (UCTD). My main symptoms include joint pain, fatigue, neuropathy, anemia, and dry eyes and mouth. Before I got treatment, it became difficult to walk for more than short spurts and do things that used to come easily to me, whether that was dancing or opening a jar. I'm a physical person, and could feel my UCTD draining my verve away. Luckily, after multiple tests and connecting with a good rheumatologist, I got my symptoms to a more controlled place, though they're not gone. I knew if I didn't want my diagnosis to define me, I was going to have to find a way to walk alongside my uncomfortable but now manageable symptoms.

Even with the pain and fatigue along for the ride, I am so much more patient with myself and others than I was in the days when I never had to think about how my body is functioning. My diagnosis forced me to choose between morning my old life and living my current life fully in a way that respected my situation. I could be tired and shut down, or be tired with a purpose. I choose purpose and accepted my new limitations. Acceptance is not surrender, I just made the conscious choice not go to war with reality anymore. It introduced a new level of flexibility into my life — on a bad pain day, I had to find the balance between gritting my teeth and making the situation worse or bowing out entirely. It forced me to adapt plans, recognise my body's limits, and become ok with asking for what I needed. I have gotten much better at communicating openly and saying things like "I can't do that today, but we can do any of these three things instead?" Initially, I judged myself harshly for making these adjustments, but I've come to realise how much they enrich my life. And I've found my friends and family are always more than accommodating when I do need to make adjustments.

I initially experienced my UCTD as a distracting struggle. But now I'm happy to say that on most days, it's background noise in my life. And it prepared me for the second life-altering situation that came my way — motherhood. While motherhood was a more deliberate and a much happier new path, it too involved a renegotiation with myself around priorities, difficult choices, and increased self-compassion. But learning how to take a kinder approach to my limitations after my diagnosis helped me ease into the struggles of parenthood. It also helped me manage the sense of pressure and judgement from other people that I think is uniquely placed on mothers. The gentler stance I chose to take with myself and my UCTD has served as a guiding principle in my parenting, especially when faced with the opinions of others, and I'm proud of that.

In terms of the big picture, my UCTD taught me how to better manage uncertainty. I don't know what the course will be; I don't know if my UCTD will stay in this very manageable place or escalate into something more severe. I didn't and still don't have all the answers on having and raising children, but through my diagnosis, I've been reminded that I don't have to know it all to enjoy life. It's been such a help when I'm worrying or stressing about what will come. Before this all started, I was pretty allergic to asking for help. Even now it doesn't come naturally to me, but I do ask for help when I need to thanks to UCTD, which I've learned is so important making parenthood more manageable, too.

My almost three-year-old daughter is the most energetic person I know. She is demanding, and magnificent, and a joy to witness. Her capacity for play and exploration is boundless. And because of the skills I've learned through my diagnosis, I can show up for her and enjoy her, even when I am not feeling my best. She can see me contented even when things are far from ideal, and I'm grateful that I can show her there is strength in that.

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